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Hi Everyone,
I have read on numerous posts that with AP things get worse before getting better. And I have noted a trend in the posts that there appears to be a rough hill at the 4-5 month time frame (while your skin hardening continues to progress) that you have to climb over before you start seeing any decent improvement. And this improvement may not be noteworthy until the 6, 8, 9, or 12 month AP time line.
Anyway, this is my diffuse SD progress report, after 4 1/2 months of AP:
– Fingertip ulcers – essentially cleared up in the first 3 wks
– Debilitating fatigue – appears gone at 4 1/2 mos; better sleep certainly contributing
– Raynauds – Still a factor, but summer is around the corner,
– Chills, skin burning – Under control due to taking 100 mg Lyrica at bedtime
– Sleeplessness (due to skin burning) – Significantly improved due to taking 100 mg Lyrica at bedtime
– Weight loss / appetite – Appetite much improved. Finally gaining some weight, perhaps due to Lyrica.
– Skin tightening – Unfortunately still progressing; hands, calves and now forearms very tight (and hard to find a vein for IV's). Upper inside of arms tightening, but possibly in check. Abdomen getting tight (and not from doing abs!)
– Internal involvement – Fortunately there is still no indication of any notable internal involvement, besides very occasional swallowing issue (next PFT and echo in end of June)
– It is still challenging to differentiate the symptoms of SD, herxing, and mino side effects.
I am currently in the middle of 3rd Clindy IV cycle (“blast the bastards!”)Also, Dr. F. is very pleased with my progress.
Additionally, I'm still riding my bike to work and swimming (most beneficial!) when not IV'g.
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hi Randy,
Glad to hear you are doing better. I just wanted to mention that befor ethe skin tightening improves, it gets tighter first so don't be alarmed. After it will loosen permanently. I have noticed this in all areas.
Best Regards,
Karen R
Randy,
Bravo! And thanks so much for updating us. Your progress will encourage others on the same road as you, I'm sure.
Best, AFRandy,
Great news! My hubby's raynauds is still a daily issue, however, not as bad. It used to take forever for his hands to warm up, and they would get ICE cold. Now, they are not Ice cold, just cool-cold, and don't take that long to warm up – it is still there, but improving. He didn't have the skin involvement, but it seems that it, too, gets worse before better. Good luck and keep the faith!
Hi Randy,
Glad to hear you're getting better, especially with the fatigue. When the skin thickness improved for me, it was proximal to distal. My face, neck, and thighs were the first areas to soften. My fingers remain pretty hard for a couple fingers but improved for the others. Raynaud's is still an issue too for me.
Give a swift kick to those myco-bums for me!
– SusanHi Randy,
thanks for the update and Im really glad to hear your doing well on AP! I also have difuse sclero but mine started in March 06 and I just started AP April 31st 2008, so you are a few months ahead of me and its nice to know things will improve….thanks for the update.
Randy,
Thanks for the update. I know it is tough with the skin issues continuing, but you will get there! Keep riding that bike and swimming. All the doctors we have seen attribute Jess' quick recovery to the fact that she kept up the swimming everyday, no matter how fatigued she felt. Keep moving those bones!
Keep up the good work, you have good motivation to stay the course, those two beautiful kids and the lovely wife.
Cheryl
Hey Randy – great report glad you are “getting there”. My Raynauds is the only symptom that has not shown improvement but as you say summer is here. I was suprised this morning as it was 65 degrees and my hands still seized up some, although briefly. Getting that good nights sleep sure feels nice doesn't it. Keep up the good work!!
Hi Randy.
Great post! Good to hear. After now 46 days on AP and everything just getting worse and worse, I also noticed that most here on the board recognize positive changes after 4 rather 6 or more months. That seems like a long time just now! Good to hear that it sometimes takes shorter time. Keep posting.
Krams
Hi Randy
Sounds like some headway is being made –my progress was much much slower and I am in remission now
Richie diffuse SD
Hi Everyone,
Now at 5 months AP and completed 3 clindy IV cycles ….
My underarm hair and my whistle is returning, and I can wring out a washcloth with my hands…..
Yes, little improvements along the way, ones you can see, hear, and feel.
Randy
P.S. Thank you all for the continued encouragement.
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Randy,
I am so glad to hear about your improvements. How many Clindy IV in each cycle do you get each month?
Keep up the great improvement!!!
JB
Hi JB,
For me, each clindy IV cycle is 7 days long every month. Each 7 day cycle is dosed at 300mg for day 1, 600 mg day 2, and 900 mg days 3-7.
The herxing reactions to the cycles has interesting.
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Randy,
This is a lot of Clindy and very aggressive AP treatment comparing 900 mg daily for 5 days every 6 months. How many months do you have to do this Clindy IV treatment? This can certainly knock out a lot of mycoplasma!!!
Does Dr. F get your liver and kidney checked often?
JB
It is my understanding that I can expect to do this for 1 yr, i.e., 9 more Clindy cycles. I did have blood labwork in Mar and May and my liver and kidney values look good. I expect another look in July. (I have also been concerned about the amount of Tylenol I need, typically 1000mg two to three times each day….though three or so docs have told me not to worry about the Tylenol).
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"
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